Tuesday, February 28, 2012

Ready, set....

We have our surgery date for next week.  We are in the throes of getting ready to go.

While we are over there for surgery I will not blog every day like I have with other hospitalisations because we will have the kids there with us.  Plus, I tend to be a bit of a workaholic and I need to take more regular breaks from the computer.

I will try and keep everyone in the loop but don't panic if I don't post for a day or so - no news will usually be good news and the actual surgery will not take place until toward the end of the week.

If you know us in real life please SMS rather than call as we will want to keep our phone lines free for the hospital to contact us.  We will call you back when we have a moment.  If you must call, please only call Jon's phone.  This will keep at least one phone always free for the hospital to contact us.

If you want to support us during this time, you can:

- Pray, don't underestimate the importance of it.

- Send an e-mail or leave a message in the comments showing your support.

- I have the donations button on the support page functioning for those wanting to show tangible support (but please do not feel obliged - but any donations are accepted with gratitude)

- Give your kids an extra hug and kiss tonight and pray a prayer of thanks.

- If you are local to Melbourne and wish to drop of a prepared meal for a family of two adults and five kiddos, shoot me a message or SMS and I will give you the details of where we are staying.  My e-mail address is tasjess (at) gmail (dot) com

- If our kids call you Aunty or Uncle and you want to babysit to give Jon and I a chance to take a walk together, grab dinner or go make out in the car shoot us an SMS.  If you are a strange person from internet land who has never met us in real life but really loves kids, thanks but we restrict baby-sitting duty to strange people we know ;)

We would prefer that visitors for Kaylee wait until she is stable in the Koala ward - ICU is a full on place.

This is the big one.

God is ever faithful and good and His hand is over us.

And I may just be peeing my pants a little bit.

Kaylee Grace, rocking the Fauxhawk

Sunday, February 26, 2012

But she doesn't look disabled...

I've heard it a few times, people telling me that Kaylee does not look like anything is wrong- other than the tube.  But as she gets older it is likely to become rarer that people say it.  It will become harder to miss.

I remember talking to another Heart Kids Mum whose son has been in and out of hospitals his entire life and declared inoperable more than once.  She has fought hard to keep him alive, happy and comfortable; getting second opinions when she was told that all hope was lost, chasing nurses to make sure he had his meds exactly on time, finding babysitters for her other sons and dropping them off before getting him to the hospital just in time for him to crash.  She said to me that in some ways, it's not so bad.  When things are going bad they are awful - but when things are good it is all normal.  She told me that she thought having a child with "one of those syndromes" would be so much harder because every day you have to deal with the syndrome and all it entails.  You never get normal. 

I've thought a lot about her words and I have come to the conclusion that it is pointless to compare monsters. Those whose needs are visible fight pity, condescension and rejection.  Those whose needs are hidden face misunderstanding, judgement and disbelief.  And all of us grab the positives and hold them tight, not wanting to imagine life without them.

It has been many years since I have looked at a child in a public place and judged them and their parents.  I never was one for the "My child will never....." speech and now that my kids have done pretty much everything I pretty much just shut up about it.   I am even less inclined to pass judgement after hanging with the "special needs" crowd for a bit.  The child having a melt down who looks like a spoiled brat could be dealing with a sensory system that completely flips out, could be exhausted and at the end of their tether after their sibling disappeared into hospital for two months, could be trying to cope with a world whose social cues are baffling and incomprehensible to them or could be in an extraordinary amount of pain and discomfort for large portions of the day, undergoing painful and debilitating treatments to keep them alive.  We. Just. Don't. Know.  Because so many special needs look....normal.

I have spent most of my life living with and/or loving people with chronic illness or pain.  People who LOOK fine, who can even function "normally" most of the time, then without warning be vomiting and weak or bedridden with debilitating pain.  At first people are concerned but then, after days, weeks, months or years, sly comments start to be made about hypochondria, being a "sook", just "getting on with it".  Even, and sometimes especially, doctors and nurses hold these attitudes.  Because they don't look sick they face judgement at a time they most need help and understanding.  

Growing up my report cards continually had 'lazy' on them.  'Does not try', 'needs to be more motivated', 'does not listen', 'will not complete set tasks'.  The strange thing is I am actually a workaholic.  My personality gives me a tendency to become obsessive.  When set on a goal I find it hard to unplug and will work at it with every fibre of my being - to the exclusion of eating, sleeping and basic personal hygiene if I let myself.  I have to bribe myself to take a break.  Looking back now I see a girl who struggled to decode and remember instructions.  I would have them in my head and then five minutes later they would be gone - much to my frustration.  I remember saying to teachers and other adults in my life "Can you please write that down to help me remember?" and they would prickle under the increased work load and refuse.  And somewhere between them telling me and me sitting
 down I would forget.  And I started to believe them when they said it was because I was lazy, vague and did not try.  I remember cluttered worksheets blending together in a swirl as I tried to find a handle I could use to understand numbers - then giving up and retreating to my world of books and words which made infinitely more sense to me.  Looking back now I see a kid with mild dyscalcula and possible auditory processing issues.

I manage it now.  Because I have worked hard to understand these issues I now know how to make my brain take detours around those parts that don't work well so I can function in the "real world".  I research things myself until I understand them thoroughly because I usually don't retain what people tell me.  It is like my brain mis-files it somewhere between my short term and long term memory. I ALWAYS have something to write in while I am talking to people in the hospital and those I work with regularly have learned just to give it to me in print wherever possible. I cover a lot of my little quirks.  Most of my friends think I'm being funny when I take something said in jest literally - most of the time I will click a couple of hours later that they were speaking figuratively but in the conversation I instinctively cover my slips with cracks and jokes and witty comments and sometimes I just say weird stuff, the conversation gets a little awkward then we all move on and pretend it didn't happen.  This is probably why

Source: weheartit.com via Jess on Pinterest

I would not class myself as having special needs because I function reasonably well in the world without others having to accommodate my needs now.  I'm not actually special, I'm just quirky.  But I remember the frustration of wanting to understand and fit in, trying to get the adults in my life to help me to succeed and finally accepting and applying to myself the label "lazy".

Take that, times it by a million, double it and times it by ten and move the decimal point eight places and you have a tiny speck of what I imagine those with special needs that aren't visibly identifiable to the average person face daily.  People whose struggles with autism are belittled because they "look so normal".  People whose illnesses or differences are written of as laziness or hypochondria.

Kaylee's diagnosis was made within a week of her birth.  Many people take months if not years to get a label they can write on forms.  Months and years of dealing with a sick child with no idea of what is coming next.  Months and years of wondering if this is something which will dramatically reduce their child's life expectancy.  Months and years of battling with doctors and red-tape-makers who think they are just being "over-dramatic" because there is no nice, neat diagnosis that attracts funding, support groups and research.

The visability factor doesn't make things easy by any means, the struggles are markedly different but they are still there.  Wherever we go we stand out.  I can't take my kid to the shop without people reacting in some way to Kaylee's tube.  Most of the time (because she is all cute baby and chub) people are polite and curious.  As they notice her tube and hear our story some people are horrified, shocked or awash with pity.  There are days when I do wish that they only thing they would notice is her eye lashes and her hair.  As much as I love teaching people about my girl and kids with special needs - there are days I would like a day off from being "special needs ambassador" to just be Mum, Dad and Kids hanging out together.  But we are still at the approachable end of visible special needs.  We are approachable, non-intimidating.  She is cute.  If she had a few less fingers or limbs, if her scars were on her face or head instead of hidden under her shirt, if she compulsively waved her arms in front of her face, if she was at the age people expected her to talk, walk and use a toilet and she didn't.  Who would want to know her story, who would want to know her?

I generally do not try and read Kaylee's story before it is written but in all likelihood she will look different.  In all likelihood she will act different.  I will do my darndest to change the world before she gets into it.  To change it to a world that does not judge people who do not talk as having nothing to say.  To change it to a world that does not judge those who think slower, think different, as having no worthwhile thought.  To change it to a world where people do not look at the weak, the broken and the less able and feel afraid.  To change it to a world where people are valued and needs accommodated.  Because they are NEEDS not seeking favouritism or creating inconvenience.

But if, by some strange chance, I do not change this world.  If I do not roll out a red carpet of love and acceptance for her to walk in this world.  I know that whether she looks different, or just is different, this world is a hard place to live in.

So please....change the world with me.

Saturday, February 18, 2012

Update and the voices in my head again..

We are all home and it is all good.  Waiting now for a phone call to tell us what date Kaylee will have her surgery.  It has been pushed back to March to give her time to recover fully from her little infection.  I think what happened is (WARNING: TMI, gross bodily fluid talk) as Kaylee vomits it irritates the inside of her nose and makes her nose snotty and that actually runs down her cleft into her stomach which makes her reflux worse which makes her vomit more which irritates her nose more and we get into an incredibly gross spiral of snot and vomit.  I think that she had a big vomit and it hit her snotty nose and bounced back into her lungs causing aspiration.  She has pretty much recovered from that now but I am doing everything I can to interrupt any snot-vomit spirals.  I am still not loving her sats and it is taking a big adjustment for me to learn that where she is now is OK because if she had been like this 3 months ago it would have been cause for concern.  But she is growing out of her shunt and needs her full repair and we are best to wait a little while to make sure she is as strong as she can be.  It is not a small heart surgery and while it does have a high success rate she needs all things possible in her favour.

One thing I have learned while at the Children's Hospital is there is always someone whose situation puts your own into perspective.  I met a lovely Mum whose son had just had some holes in his heart repaired.  As I talked to her she told me that her first and second sons were "heart kids" too.  Her first boy was born with hypoplastic left heart syndrome.  This is a pretty severe condition - perhaps the trickiest of all heart defects to fix - and after his first surgery he got a clot in his shunt.  They had closed him up and it took 40 minutes to get blood flowing through his shunt again, by which time he was brain dead.  They turned off the machines when he was three days old.  Then she had another son with the same condition - hypoplastic left heart syndrome.  He has just had his third surgery and is doing well however he will always be a heart patient.  So all her three sons were born with heart issues, two extremely severe and one has passed away.  As we were talking over cake she was saying to me "Wow!  You mean your daughter is on a feed pump all the time?  That must be hard!  Wow, I can only imagine what you go through with that."  I love her a little bit.

What I do is undeniably hard.  I have these two parts of my brain, Drama Brain and Logic Brain.  Drama Brain sees a small red patch on Kaylee's leg and screams "Oh nooooooo, she has one of those horrible flesh eating staph infections that  is going to eat her leg OFF!!!!   This is what comes from being in hospital so much.  Curse you flesh eating staph infection, curse you to Hades!!!!" Logic Brain says "Looks like a bit of excema, probably from the blood pressure cuff being left on overnight.  Put some coconut oil on it and watch it."  I make up Kaylee's medicines every day and Drama Brain screams "Do you REALISE that if you get this consistently wrong the best case scenario is that your child suffers awful pain and the worst case scenario is she DIES and it is all your fault?"  and Logic Brain says "...Yeah, what she said.  Don't screw this up."  You know you're in a stressful place when Drama Brain and Logic Brain are on the same page.

However I know that there are thousands of mothers who would love to have this stress.  Who would love to have medicines to help their child's body work.  Who would love to still have their child.  And it puts my stuff in perspective.

Monday, February 13, 2012

going home

We are going home tomorrow.

Yesterday afternoon, we took Kaylee off the oxygen and she has stayed off it ever since.

Her sats are all over the place but as long as they are not sustaining low saturations, we aren't worrying about it.  So I was sort of right, her sats are the way they are because she needs her repair - but the docs believe she will be fine to go home for a week or two and rest up before surgery.  Home will be good.

Tube Feeding and Health Professionals

The last topic I am going to cover (late) for Feeding Tube Awareness Week is feeding tubes and health professionals.  For the most part I have been SO spoiled with my health professionals.  We have hit a few bumps in the road and there is one particular intern in Hobart who WILL NOT be trying to place an IV into my kid again EVER.  But there are quite a few who deserve boxes of chocolates, gold stars and halos made out of glittery pipe cleaners.  If you happen to be a health professional and your deepest heart's desire is to be deserving of gittery-pipe-cleaner-halo status, here are a few do's and don'ts that will help you get there:


....recognise the expertise that a parent brings to the table.  Over and over again I have been told by my gold-star doctors and nurses that while THEY have medical degrees and know lots of clever stuff, I am the expert in Kaylee.  I don't know the medical terms for things and half the time I don't know exactly what I am looking for or even what I am looking AT, but if I say something is not right it is worth checking out because I am with the kid 24 hours a day.

....boost the confidence of the parent wherever possible.  I have raised 5 healthy children through baby-hood, I have a degree, I have worked in animal care so I am used to using syringes and measuring feeds etc....and taking home my baby with a feed pump TOTALLY SCARED THE PANTS OFF ME.  Because my doctors and nurses and care manager and everyone else on my team had faith in me, I felt able to step up and take the reins which made things so much better for Kaylee and our family.

....recognise that what is sustainable in the hospital may not be sustainable in a home environment.  When we came into the Children's Hospital this time around the ICU nurse was perplexed to see that Kaylee's feed rate was 32ml per hour over 21 hours a day.  Why on earth would she have 3 hours a day off the pump?   I giggled and pointed out that at HOME it can be quite handy to be able to go for a walk or take her up to an appointment without lugging a feed pump!  Parents get tired and need to sleep, there is no shift change or hand-over at home and family life continues regardless of feed pumps

....treat EBM like GOLD.  I work VERY, VERY HARD to supply Kaylee with expressed breast milk.  If it gets wasted through carelessness or ignorance....I am likely to kill the waster a thousand different ways in my head.  Seriously, be careful with the BM.

...fake confidence.  While tube feeding is reasonably common, I know that NJ tubes and EBM is not.  A doctor or nurse who confidently asks questions and lets me know that he/she is interested in learning and is totally sure that they and I will work this out together makes me feel safe.  If their eyes widen and they start stammering and stuttering and get all flustered.  If they use whiny tones about what they don't know when talking to co-workers or supervisors within my ear-shot.  If they completely FREAK OUT then I don't feel quite so safe.  It is possible to be confident without being arrogant.  It is possible to be open to learning while still giving an air of "Oh I totally know what I'm doing here and I am totally NOT going to kill your kid if you go to sleep".  So yeah, confidence is good.

....refer patients/parents to support groups.  Medically, tube feeding is not a huge deal.  Socially and developmentally it completely is.  Getting to know other people who have had to tape stuff to their kid's face daily is a very important thing for a tubie's parent.  Getting to know tips and tricks to stop tubes being pulled out and sustain feeding schedules is invaluable.  Lots of health professionals counsel parents to "stay away" from the internet.  It is worth realising that (a) they won't and (b) there are excellent resources out there.  Start by giving them sites like
tube feeding awareness

tube feeding awareness on Facebook

tube fed kids

....back up other health professionals, especially the nurses.  Whenever I am in hospital I am putting Kaylee's life into the hands of the doctors and nurses there.  The nurses are the ones responsible for the day-to-day care of Kaylee and if I have no confidence in their abilities I cannot sleep, shower or pee with peace and confidence.  If you have an issue with a co-worker, take it up with the co-worker and not in my earshot.  Help me pee with peace and confidence.

....maintain an open line of communication.  Being able to ring and talk to a doctor has prevented us from having to come in to hospital numerous times.  


...ask a parent to defend a diagnosis or course of treatment.  Check the file and make a phone call  by the time a parent comes in to hospital they are usually exhausted and frazzled, give them a break.  We are doing the best we can.

...walk in to a patient's room at 4am and ask the parent what the diagnosis is and why the child is on the current course of treatment.  There's a little thing called hand-over that should have happened at the start of shift.  Parents should not have to educate you at 4am.

Friday, February 10, 2012


Here is my theory.  I think that a combination of reflux and growing out of her shunt is making Kaylee need oxygen.  I have a feeling that she had actually started well on the road to needing oxygen at home  My guess is we are here until the Doctors realise this and schedule Kaylee's surgery.  I don't have a medical degree, although I could probably get a degree in Kaylee, and I am happy to be proven wrong (it'd be nice to actually be able to PACK and PLAN properly!).  But that's my theory.

Tomorrow we will try again and I have a feeling that I will once again be turning off alarms and watching to see that Miss K doesn't get too blue.

 And then we will spend the rest of the day chilling out together

and we will do it all again the next day.

Do you a deal Miss Kaylee, you give up the nasal prongs and I will give up the mochas.

A day in the life....

One of the suggested topics for tube feeding awareness week is what our day looks like.  Every tubie's day will look a little different.  There are those on continuous feeds like us and others who are bolus feeds (big lots at once rather than little bits constantly).  There are some who are continuous over night and bolus in the day.  There are some who can take some of their nutrition orally and just need to top up through the tube and those who are reliant on the tube for every bit of nutrition.  Tube fed people are babies, toddlers, children, adults and elderly with a vast array of interests and commitments.

For us, this is a "typical day" before we came into hospital this time around:

7:30 ish meds, hang feed,  clean up Kaylee (give her a bath depending on how much she vomited overnight), get dressed, express (often takes me about an hour to an hour and a half first thing), grab some breakfast (sometimes Jon makes me poached eggs on toast!) and start schooling for the day.

11:30 hang feed, express, help make lunch, feed the kids and get Andrew and Anna off to bed

1:30 meds, finish any schoolwork not complete, try and get something constructive done (like house work, cooking, paperwork etc.)

3:30 meds, hang feed, express (I often catch a nap while sitting up and expressing), help bring in the washing and fold it, help the kids with the end of the day clean up and get them bathed while Jon cooks tea.

7:30 meds, hang feed, family worship and story time, get the kids off to bed and help Jon clean up from tea

8:30 express

11:30 meds, hang feed (I usually hang a larger volume and add a cooler bag with cooler bricks so it will be safe to leave until morning

Sometime between 12:30 - 1:30am meds

Dotted inbetween that is holding Kaylee if she has reflux, cleaning up any vomit, changing nappies (Kaylee's and Andrew's - although Jon does most of Andrew's!), fitting in Kaylee's various therapies, being a Mum to my other kids, being a wife to that fantastic husband of mine who picks up all the slack and finding time to pee.  Some of those meds need to be crushed up, suspended in water then measured out and others I can just draw up.  I am hoping when we go home after Kaylee's heart repair we will have significantly fewer med times.  Few days actually work out to be typical, but most days we get it all done and Kaylee always gets her feeds and meds.

Of Mochas and O2

Today we are attempting to get Miss Kaylee off oxygen so we can go home.  So far every time we have tried to do this her oxygen levels start hanging out in the mid to high 60's.  FYI, "normal" people's sats sit in the high 90's - we were happy if Kaylee's sat over 75.  That's my girl in a nut shell.  Vomiting blood with oxygen saturations 3/4 of that of the mere mortal?  Meh.  A sniffle?  Airlifted to one of the top paediatric hospitals in the world.

After several attempts to get Miss K to kick the O2 habit and maintain sats over 75 the docs are now theorising that perhaps she is just outgrowing her 3mm shunt (likely seeing as she is due for full repair this month anyway) and seeing as she seems to cope with lower sats anyway lets just take her off the O2 and watch her closely for a bit.  So we took her nasal prongs away and I got myself a jumbo mocha because by now, I have realised we are in for a loooong day.  By the time I had got myself a mocha she was sitting in the lower 50's with a touch of a colour change so we have started wafting a bit of O2.  That means sitting a mask on her chest so the air around her has a higher proportion of oxygen just so as an interm step toward being O2 supplement free.

Things that will make Kaylee set off alarms today that we don't have to worry about too much:

Filling her nappy
Wiggling too much and dislodging a probe
changing her nappy and knocking a probe
reflux (have I mentioned how often Kaylee vomits or has reflux?  It's a lot)
getting a nose full of vomit or snot
probes deciding not to work

Things that we do have to worry about:

If her sats sit too low for too long
she stops breathing
she has a major colour change

So currently Kaylee is sitting on my lap "helping" me type as I reach up to switch of the alarm above my head which is periodically going BONG BONG BONG BONG BONG!!!!!!  or sometimes, especially if I am not fast enough, BING BING BING BING BING!!!!!!

And I am feeling quite fabulous because the caffeine from the mocha and the O2 that is wafting up over me combine to make the world a very warm, happy, fuzzy place and our nurses especially lovable.

You gotta take your kicks where you can get 'em.

Thursday, February 09, 2012

Our Journey to Tubie Town

One of the topics for Tube Feeding Awareness Week is how we got here.

If you have read my blog at all in the last couple of months you probably know a bit about our journey thus far.  If you are new to this blog try THIS and THIS post or the CdLS page for a description of Kaylee's condition and how we got where we are today.  But I will start at the start.

When Kaylee was born I thought "Wow she is tiny.  Those are some funky little hairy patches on her thighs I wonder what that means.  She is beautiful.  How am I going to get this tiny baby to latch and feed?  How am I going to keep her warm?"

I am a long term breast feeder I guess, having fed 5 kids previous to Kaylee's birth.  In fact, for the first half of my pregnancy with her I was still feeding Kaylee's older brother.  Feeding my babies has always been one of the most pleasurable aspects of mothering a tiny baby for me.  I treasured those moments when I would be forced to slow down and savour their tiny perfection as they guzzled greedily at my breast.  For a couple of them, it required work and patience and time to get things working properly, but we always managed it and while I knew it would be a challenge with the tiny infant I had in my arms it didn't occur to me that we wouldn't have a "normal" feeding relationship - I just figured it would take some work.  After some rather horrid afterpains I was curled up in bed with a tiny bundle of baby carefully expressing clostrum into her mouth.  She lapped at it and opened her mouth but showed no signs of really wanting to attach.  After a while we trundled accross to the hospital where I thought they would tell me what kind of syndrome she had and I would take her home to figure out the feeding thing....little did I know.

The next weeks - perhaps months - was a complete blur of hospitals, transports, tubes, wires and a million other interventions and experiences which I do not really care to relive.  I know her feeding tube was placed sometime in there - perhaps during her first PICU stay the day after we flew in to Melbourne?  That would seem to make sense.  I expressed with dogged determination.  I remember the first time I managed to express a decent amount of milk.  It was the middle of the night and I was reading a message from my oldest daughter which read "Compared to my love for you the sky is like a dot".  I carefully screwed the lid on my milk and RAN to Kaylee and cried out to her "Look baby, I made you milk!!"  and he nurse very carefully started it going down her feeding tube and into her little tummy.  And thus began my love-hate relationship with feeding tubes. As I said a few days ago to another tubie mama - feeding tubes, love that they keep my kid alive, hate every other dang thing about them.

Kaylee was a few days old when we made it up to the cardio ward.  It had been a rough few days for both of us but she was finally stable.  With the help of Sue, one of the lactation consultants, I put Kaylee to the breast but I have to admit my expectations were very low.  I was completely blown away when she actually tried to feed!

It was a balancing act to put her to the breast to try and feed without exhausting her.  A combination of a cleft palate, heart condition, poor suck and swallow coordination and poor muscle tone and control all due to her syndrome made feeding very difficult.  Because she had the feeding tube, she was able to stay hydrated and well fed which gave her the best chance of learning how to feed for herself.  Without the feeding tube, Kaylee would not have survived her first week.  We did try her with a special bottle designed for children with special needs but she only got a few mls more than she did at the breast (8ml as opposed to 3 ml, and the bottle tended to try and drown her a bit which wasn't good) so I opted to keep trying at the breast instead because of all the other benefits of direct breast feeding and I had the option to do that because all her milk was getting into her anyway through her tube.

As I researched more and more about Cornelia de Lange Syndrome I learned that reflux  was a major life long issue for most people with the syndrome and I became very proactive in asking for her reflux to be assessed and managed with this in mind.  Because of the excellent care she received we had little trouble with reflux until after Kaylee's first cardio surgery.  Unfortunately after her shunt was placed Kaylee needed to go on a medication which interacted with her reflux medication.  She was still on a different medication but it was not as effective and Kaylee's reflux started messing with her heart stuff.  Just as we had started going to 3 hourly feeds rather than hourly or continuous - which was a big step toward "normal" - we had to place an NJ tube instead of her NG tube.  This is a tube which goes through her stomach and sits in her small intestine.  I love the NJ tube because without it Kaylee's heart condition would still be requiring her to be in hospital.  I love the NJ tube because without it Kaylee (whose reflux has gotten more and more severe) would probably vomit a large portion of what she was fed and would not be growing or putting on weight at the rate that she needs to so she can get ready for her surgery.  I love the NJ tube because it keeps my baby alive!  It gets my milk into her which has helped her stay reasonably healthy and grow delightful fat rolls.  It means I can give her medicine without worrying about her vomiting it up or spitting it out.  I can keep her well hydrated - a very important thing as dehydration could make her shut stop working.  But I hate it for every other reason.
The NJ tube needs to be placed by a radiologist so they can take pictures of where it is which means if it gets clogged or kinked we need to go to hospital - and if that happens after hours (which, for some reason, it almost always does) we need to stay overnight until they come in the next day.

The NJ tube means that Kaylee must be fed small amounts continually.  This means she does not get hungry - which SOUNDS good.  But learning what hunger means and that one needs to eat to stop feeling hungry is something that most babies do without us really thinking about it.  Right now Kaylee is not learning that lesson.  The cycle of hunger and feeding also means that a baby wakes up and interacts with either Mum or Dad and uses mouth muscles (the same muscles used for speaking, chewing, swallowing saliva etc. - all things that Kaylee was going to find challenging anyway with her other issues) several times a day - and in some cases several times a night!  The nerves that feel the sensations of hunger, being touched and held for a feed, milk being drunk, tummies getting full all send messages to the brain not only about food and eating but about where the baby's body is in space (sitting, lying, being touched etc) and the brain creates pathways with this information which we use every day for our whole lives without even thinking about it.  To help Kaylee develop these pathways I massage her gums, give her skin-to-skin contact, put expressed milk on her dummy so she can experience taste (she used to suck her dummy but since her reflux has worsened Kaylee has largely lost her sucking abilities, we will have to re-teach her to suck).  There are fabulous therapists who will help us with all of these things as we come to them.  So as with most big medical interventions, there is the good AND the bad.

After Kaylee's heart surgery we will start doing more with her feeding tube.  Trying out an NG which is a tube through her nose to her stomach (which I can learn to place at home, eliminating the need for quite so many hospital visits).  We may have a G tube placed which goes through her the wall of her tummy into her stomach and sometimes (in the case of a GJ) into her intestines which would eliminate the irritation of a tube in her nose and throat.  Perhaps we will be able to move to bolus feeds where we give feeds every few hours rather than continuously which would be wonderful.  There is no reason why Kaylee can't start to learn to eat "normally" as we get her other health issues sorted out - but it will take her a while.  In the mean time I will be able get all the breastmilk and medicines into her which she needs.

We have learned just how common the tubie experience is since we were introduced to this world.  It isn't just people who are as unwell as Miss K.  There are some people who look "normal" who lift their shirts and hook up a pump to their belly for a feed.  For most who have them a tube is a life improving - if not life giving - measure and the best chance they've got at getting well.  We have been blessed by the knowledge, support and information provided by other tubie families and support groups and it helps us make informed choices for Miss Kaylee, our little tulip.

So that's how we got here and this is where we are going for now.  If you ever find yourself in a position where you are having to manage a feeding tube there are some links to resources at the bottom of our Cornelia De Lange page